health systems, monitoring, evaluation, learning.

While i have given some account of my symptoms in earlier posts, it seems useful to give a quick recap to contextualize why i found the hospital space so difficult to navigate. And let’s be clear from the outset: i am an extremely privileged patient in Delhi. i am physically inclined to get good service in hospitals; i can read and, moreover, can read English, the language of most hospital signs (at the hospital chain i attend, most signs seem to be in English only except for the one about not doing pre-natal sex determination); and i have enough medical knowledge and confidence to ask my doctors questions. My navigation issues were not about lack of comprehension but rather poor design and poor service.

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Though i had been feeling grungy for a few days, the distinct symptoms set in on a Monday morning. My alarm went off and i woke up, ready to push myself into a sitting position in bed, only to discover that my wrists and elbows were not interested in supporting my weight. On later mornings, they didn’t want to bend from being locked down by my sides and i would have to spend many minutes consciously willing my shoulders and elbows to cooperate so that i could get my hands to my face to wipe the sleep out of my eyes with my thumbs, since the rest of my fingers were stuff and against the idea of balling into fists.

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But that first morning, having had my arms joints turn to jelly, i tried to push the sheets off of me, only to discover that my fingers were not interested in pinching the sheet to move it. No doubt this all looked a bit funny, a bit like the Wolf of Wall Street quaaludes scene, but it is worth noting that it was actually terrifying. it is worth noting this because it is something that not a single doctor acknowledged over the course of this illness. Doctors: i don’t care how many patients you have coming in each day complaining about the same symptom set — overnight loss of functionality is scary to each of those patients and deserves to be acknowledged as such.

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In any case, on the first morning, i finally did some worm maneuvers to at least get myself sitting up and ready to try standing. This is when i learned that my legs and feet weren’t faring much better. The arches of my feet felt like they couldn’t support my weight and the rest of my toe joints didn’t want to bend to facilitate walking. My knees had gone to rubber while my hips were like the Tin Man in Oz. It was a long, slow, fairly ignoble shuffle to the bathroom. Once reaching, i learned that my fingers weren’t going to support gripping a toothbrush, a water bottle, a hair brush — really anything at all. My thumbs would work for texting but not much else.

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Just like that, i became a 90-year-old woman (crankiness included).

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When i finally got back to bed, my only interest was trying to get joints to pop, which seemed to hold the elusive promise of some pain relief. Besides napping, i am not sure i did anything the first day besides bending and extending my right leg in hopes of a knee pop and doing the same with my left elbow, which stubbornly refused to cooperate.

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All of this is to say that i wasn’t in much of a shape to walk by the time i decided to get to the doctor the next day — forcing me to recognize explicitly just how much mobility is expected of patients in a hospital. To leave my flat, i navigated the marble stairs down, relying mostly on weight put on my forearms on the railings, since i had as little faith in my wrists as i had in my ankles to support me. My mostly faithful autowalla Pankaj drove mercifully slow and cursed out another driver that tried to rush him.

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At the hospital branch (of a larger corporate chain) nearest my house, there isn’t a real drop-off and pick-up space, since the hospital is sort of nestled on a residential ‘slip road’ that runs parallel to the main road. This creates traffic jams and issues. Nevertheless, Mr. Traffic Mover, don’t yell at sick people to get out of the car faster or to walk faster. Of course, not all people who go to a hospital/clinic are sick and not all of those who are sick have mobility issues — but let’s make some basic assumptions about the types of people who are arriving to a hospital and try to accommodate.

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Walking to get into the clinic is hardly the only walking that you will need to do — indeed, i wondered multiple times if the the architects of clinic and patient-flow systems had ever considered the fact that patients might be sick in their design.

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First you go to a counter to get a token in order to go somewhere else to sit and wait to pay for your consultation. Then you’ll pay for your consult (also, attendants/receptionists, if someone asks for help getting their credit card or cash out of their wallet, bloody help them. Again, you work in a hospital, where people need help).

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Then you’ll go off to find, first, the queue at the ‘sisters’‘ station (though it is a secular hospital, the nursing aides are referred to as sisters) to get your vitals taken (where you may have to wait), then probably walk somewhere else to wait for your consult and then walk to the consult room itself. None of these are short distances around a central waiting room; some of the trips involve changing levels.

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You may also get lost along the way, since there are at least two ‘sisters’‘ stations that look identical but are on opposite ends of a large open space. Since the receptionist could only muster enough energy to vaguely wave that you need to go somewhere behind her, you don’t know whether to turn right or left. The signs indicate that both directions are legitimate options. Sick people, in general, are trying to conserve steps and don’t particularly appreciate getting themselves to one station only to be told that they should have gone to the identical looking one that offers the identical reading of blood pressure and temperature — but is located on the opposite side. Give reasonable instructions, as though you are trying to minimize the effort the patient needs to make.

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If you are prescribed a blood or other test, you make your way back to (wait in line for) the front reception to pay in advance for the test, then go off to find the samples collection station. And if, say, you were only charged for some but not all of the tests prescribed to you, you will have to walk back to reception (where you will not receive an apology) to pay and then back to the sample collection station.

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Then you can make your way to the pharmacy and finally, attempt to leave, after spending several minutes cajoling the fellows standing outside at a podium to help you flag down an auto.

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Surely there is way to streamline some of this back and forth or at least make it incumbent on hospital staff, not the patient, to do the some of the running around. There are, so far as i could tell, plenty of staff idling about.

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At one particularly low moment, i found myself in the west block (separate building) trying to pick up two sets of lab results, one taken in the west block and one taken in the east on two prior trips to the doctor. At first the receptionist explained that by entering my mobile number and patient ID (which apply throughout the whole hospital system, at least in order to make an appointment online), she would only be able to print the results from the west block sample and that i could walk over to east block to have someone put the exact same information in a computer over there and print out the other set of results. This is the moment when i lost my cool. As it turned out, yes, one of the idle staff could go over on my behalf and claim the other set of results.

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The question is: why, as a pretty clearly unfunctional person, i had to ask for basic assistance. Seriously, it’s a hospital, people are sick, they need help, and not every patient has 10 family members with them. Design your floor plan and your services to accommodate that.

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For better or for worse, focus group discussions are a common way of gathering qualitative information in the social sciences, as a standalone activity or used in parallel or sequentially with other types of research activities. My general sense is that focus groups are used far too often when one-on-one interviews [do not use FGDs to attempt to try to ‘efficiently’ do many individual interviews at once] would have been more appropriate to the information sought (and the analysis done, if indeed it was done at all).

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This last point is important: certain ways of gathering qualitative data are more appropriate to gaining certain types of information (for example, are you collecting sensitive information? Are you actually relying on the power of group discussion and reflection to generate useful insights or are you trying to conduct several (slapdash) individual interviews at once?).

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For interpretation, it is quite helpful if researchers explained and justified their choice of qualitative data collection strategy given their research aims. (Surely appropriate justification and description of methods is part of the research transparency agenda, regardless of whether we are discussing quantitative or qualitative data?)

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More generally, as part of my work with IDinsight, i have been putting together a guidance document on making apt use of qualitative data and qualitative approaches to research for the aims of evaluation and learning. It is still very much a work-in-progress but a small sub-section is “stuff you should about data collection include in your write-up if you opt to use focus groups.”

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Here’s my working list of what i would want to know about your data collection activities in order to render your presented results from group discussions far more interpret-able, believable, and useful in informing future work [note that much of this can be written up before data collection begins and could even be part of a commitment to (pre-) analysis & reporting plan! Deviations from the plan could also be reported after data collection is complete]:

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Objectives, justification, sequencing

How do the focus group discussions fit in the overall research strategy? What informed the questions asked (theory, a prior research stage, etc)?

For example, is the work being done to inform the intervention design or is it being used to understand a previous result?

What were the main questions/topics/themes intended to be covered in the groups and were these meaningful in the given overall research aims? (Please say something more useful than ‘to add context or color.’)

Was the intention to be hypothesis generating, hypothesis testing, or both? Clarify if different topics/themes were pursued for different purposes.

Was the intention to be inductive, deductive, or both?

Why were focus group discussions selected as the data collection strategy given the research objectives (and practical constraints)?

Positionality and placement

Who (in the sense of positionality) was part of the moderating team (such as a facilitator, a note-taker, and an interpreter if relevant)? Why did this make sense given the research setting and questions? Was the team the same for all groups conducted? If not, what dictated the differences?

Where were focus group discussions held? (this can be general, such as ‘a community space was identified in each village with the help of a local elected official’)? Was the space sufficiently private and free of distraction in most or all locations?

Composition and other group details

Who comprised the group (in a general sense, such as ‘women with children’)? How were these people selected? Did people in the groups generally know each other or not? Why was this composition strategy seen as the appropriate composition given the research objectives?

If different compositions of groups were sought (such as interviewing men and women separately or program participants and non-participants separately), why did this make sense in this context for the given research objectives (and how did it connect to a broader theory of change and/or expectations about heterogeneous experiences)?

How many groups were conducted all together? Why was this seen as a sufficient number? (Ideally, the answer will include some reference to saturation on key themes.)

What as the minimum, mean, and minimum size of all the groups conducted?

What was the minimum, mean, and maximum duration of all of the groups conducted?

Iteration throughout data collection

Did the goal of the focus group discussions change over the course of the work? If so, how and why?

What main changes were made to the interview guide / key topics explored over the course of the data collection? (And, if not obvious, why were these changes made, such as being too contentious or an unconsidered angle emerged?) Any key lessons about questions that ‘worked’ or did not?

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More to follow on details to report for data organization and analysis, including elements of capturing power dynamics during groups… In the meantime, thoughts welcome on this list. i’m updating the list as ideas come — so far, many thanks to @urmy_shukla and @_alice_evans for some additional ideas (added 19 Sept 2016).

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This post has been some time in the making, ever since Raul Pacheco-Vega introduced me to Andrew Szasz’s concept of an ‘inverted quarantine,’ defined further below, and fabulous Manpreet Singh and i started kicking around how the idea applied to our lives in Delhi. This week, a few events, including a desperate effort to stay awake to fend off jetlag, have conspired to help this post come together.

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i’ll start with the idea of a quarantine, since it has such a delightful etymological origin. The phrase comes from the Italian for ’40,’ the number of days a ship needed to stay in the Venetian harbor before its booty or crew came ashore, a practice put in place during the Black Death of the later 1300s. Specifically, the ships subjected to quarantine (or forced isolation) were those returning from plague-stricken countries. The idea, as Szasz elaborates, implies the following set-up: we (Venetians) are mostly in a healthy environment, from which (potentially) diseased individuals need to be kept out. It is a collective (if enforced) action to preserve the health of the environs and, therefore, the people living in it.

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An inverted quarantine is a response to a reversed scenario: an unhealthy environment in which individuals wish to stay healthy. Worse, these individuals have become “fatalistically resigned to it being a dangerous world” (2006). The response is a middle-class or elite response (in general) with two components intended to isolate individuals and their households/immediate environments from harm:

An individual response: Despite ‘the environment’ (air & water, in particular) having a generally public good quality, those constructing inverted quarantines are engaged in a response that “is individualistic in both goal and method.”

A consumeristic response: A sense that the way to isolate oneself and one’s family from harm requires the purchase of specialized commodities, such as bottled water.

It is the latter point, in particular, that converts a citizen (a political actor) into a consumer, who exercises a certain form of exit (to the market) rather than (political/public) voice, thus functioning as a political anesthesia.

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This idea of building bubbles through consumer purchases has many examples in Delhi, with bottled/canister or water filters as a prime example. The air quality in Delhi has recently taken on a similar, if (deplorably) much less wide-spread, response. If you haven’t been paying attention, the air quality in Delhi is real bad (as in, the worst by measures) and air pollution is real bad in general.

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To illustrate, here is a typical workday morning for me in Delhi, which has only been made more extreme by my recent acquisition of an air quality monitor for my house.

Think about how i should buy masks for my mostly faithful autowalla and then wonder if he would use them (curse my non-existant Hindi).

Arrive at office, where air filters are running most of the time, except during skype calls.

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This is not a perfect bubble but it is certainly an attempt at insulating myself nevertheless: an inverted quarantine that i have tried to construct to protect me at home, at work, and in between. i have tried to make myself part of an air-istocracy.

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And, it is worth noting that there is relatively little political action around air quality. The government has experimented with car-reduction measures but, at least anecdotally, folks were far more interested in whether this reduced their commute time than whether it lowered the particulate matter in their air.

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The idea of an inverted quarantine, as presented by Szasz, rests on both the individual and the consumer response. Given both my research and the current outbreaks of dengue and chikungunya and other viral fevers in Delhi, i have been thinking about mosquitoes and whether the concept applies — both whether mosquitoes constitute the sort of unsafe air/water/land of which Szasz writes and also whether the individual/household response is sufficiently consumeristic to count as an inverted quaratine.

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To be glib, we could lump mosquitoes and the diseases they carry in with ‘bad air’ (literally the origin of ‘malaria’) and solve the first problem.

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And the idea of a consumeristic response to mosquitoes may apply to at least some of the options available. Purchasing a bednet allows me to protect my sleeping space from most night-biting mosquitoes, though we have all had the experience that one always manages to get it. Various sprays, creams, bracelets, coils, plug-ins, and electrified tennis racquets can help to ward off mosquitoes but none of them seem to keep all of them away.

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There are also non-consumer responses to limiting mosquitoes and therefore mosquito-borne diseases in the confines of one’s house and grounds, such as covering or draining standing water, as recommended by the government in posters, including this one from my neighborhood:

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It is not quite clear how to classify these individual / private-good responses to larger public health problems that don’t have a strictly product-based bent within a framework of inverted quarantines — but they are certainly an important type of response in India. A similar idea can be found in the constant cleaning of private spaces but the dirtiness of public spaces (as catalogued in Maximum City, inter alia), the intense faith put in ‘home [prepared] food’ as opposed to dirty and dangerous ‘outside food’ and other ideas that mix real ideas of toxins and pathogens with older ideas of purity and pollution (i believe relating to ideas of protecting oneself from social threat, as Szasz discusses).

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In any case, mosquitoes, unlike air quality, are getting political attention in Delhi — or at least, people are calling out the lack of political action and the over-reliance on promoting individual preventative measures in the face of an outbreak. Mosquitoes are annoying little buggers and can (visibly) get through any inverted quarantines we might construct, so perhaps this call for more public, preventative action is not surprising.

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For my thesis research in Ghana, to better understand the context in which a new malaria treatment program was being introduced, i undertook a media content analysis of how the term ‘malaria’ was deployed and discussed in online newspapers during the relevant time period. Most of the discussion was around specific malaria donations that had come in, reporting of malaria numbers at different state health facilities, or actions that the government had or would soon take around malaria prevention and ‘environmental hygiene.’ One of the presidential candidates being covered during that time was particularly concerned about environmental cleanliness and ‘filth.’

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But a few mentions cast malaria as a disease of common humanity, from which neither rich nor poor could make themselves perfectly safe — an actual or imagined inverted quarantine does not exist (especially against day-biting mosquitoes). It (vulnerability to malaria, mosquitoes) was used as a political symbol of issues that affected all Ghanaians. This idea of malaria and the mosquito as threatening a common humanity — the common man — has a slightly funny resonance with the current political situation in Delhi, where the ruling Aam Aadmi Party (literally, ‘the common man party’) has come under fire for insufficient public health action (rightly or wrongly) in the face of an outbreak of mosquito-borne viral fevers.

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The idea of the non-availability of inverted quarantines in the face of the biting mosquito as a source of political action deserves more attention, as does trying to shake people out of believing that their inverted quarantines against polluted air are sufficient (or indeed, that the air is something from which one requires protection) — ideally stimulating meaningful political action. Just thinking about Delhi, i am not yet convinced that measures need to be both individual and consumeristic to act as a political anesthesia. If the goal is to explain a lack of political action, then more conceptual work is needed. For example, as long as my landlords believe their front yard is fresh/unpolluted because they keep a nice garden (and others at their club start to get worried as well), it is unlikely they will be taking any political action about air pollution. Nevertheless, the idea of an inverted quarantine and how it limits public outrage and civic response seems like a useful concept for studying urban (perhaps in particular?) responses to environmental (and pathogen?) threats, not just in the US, where Szasz focuses, but far beyond.

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To close with a small piece from Szasz’s 2006 presentation paper for the Sustainable Consumption and Society Conference:

Inverted quarantine is a twisted and perverse sort of environmentalism. The person who engages in it clearly recognizes that there is a problem [even if misdiagnosed?], is in fact quite distressed by the problem, and intent on doing something about it. Such a person, however, is deeply pessimistic about real change, unable to imagine that things can actually improve, and therefore fatalistically resigned to it being a dangerous world.

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One of the first things you learn when studying health systems is how imperfect health care markets are — limited time or ability to shop around, massive information asymmetries, etc. It is interesting, then, how very marketplace-like was my experience during my most recent illness episode. It is even more interesting, i think, that this took place within the same corporate hospital system — calling into question the very benefits of such an aggregated system.

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To briefly recap, i had (still have, actually) symptoms consistent with chikungunya, [~chicken-goon-yuh] which is currently breaking out in Delhi but which was not actually confirmed in my case. i managed to visit three doctors in as many days to try to figure out what was going on, which is probably the most ‘shop-around’ approach i have ever taken to a single illness episode. [The desperately curious can read the previous posts on observations from navigating the hospital and health system while being sick: here, here & here.]

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First, i saw my regular GP. Then, with some urging, i saw a recommended GP. In the interim, i had also scheduled an appointment with a rheumatologist given (a) relevant family history and (b) that my only early symptoms were joint pain , weakness & fatigue — no fever nor rash. In this post, i just focus on the GP visits.

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The visit to my regular GP on Tuesday led to my being tested (IgM) for chikungunya as well as dengue and malaria (as precautions than really being indicated). i learned on Wednesday morning that the IgM was negative but as my white blood cells were high, i was put on an antibiotic (for a ‘post-viral infection’) and given the obligatory paired antacid + anti-inflammatory as well as calcium for unexplained reasons. i actually don’t think an antibiotic was indicated and was a bit annoyed when i asked if anything else could be causing the joint pain and was told no, which is of course a silly statement since plenty of things cause joint pain, not all of them infectious.

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In the interim, through the healthcare recommendation grapevine that is Delhi, i learned about another doctor who was recommending a different chikungunya test (and promoting himself as a chikungunya guru). With some urging, i followed-up there was well on Wednesday afternoon, for a (super) special clinic double-feature day.

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The second GP i saw was in the same corporate hospital system but at a different branch, less than 5 km away. i came in with high hopes for the recommended doctor, most of which were dashed over the course of the short visit. i should note that for this visit, my (male) colleague kindly accompanied and the (male) doctor spent much of the limited attention he gave to either or us (rather than his computer screen or his phone) addressed to my boss. i have never felt so blatantly part of a capitated (pay-by-patient or ‘per head’) system as i did over the course of this week of doctor visits. (A particularly endearing moment came when i asked the doctor to explain my morning’s lab report and why the white blood cells might be elevated — and i was told to google the answer.)

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The doctor spot-diagnosed me with chikungunya while i was still shuffling in the door, before i was able to sit down and say anything beyond ‘joint pain.’ Perhaps some patients are impressed by this sort of act. i was not. The doctor did very little looking at me and certainly never touched me. i had to really push to get out a description of the specific type of joint pain i was experiencing. Much of the time he addressed himself to a desktop computer screen, where he edited old case notes as mine, such that my print-out included inaccuracies, such as stating that i have no medical allergies (i do, including to some painkillers and anti-inflammatories; moreover, he never actually asked me this question).

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At first the doctor tried to talk me out of getting another blood test (PCR, this time) since it was expensive (true) and since he was so certain i had chikungunya (ass).

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He then spent at least a minute of our already poorly utilized 10-minute appointment slot to denigrate my normal GP, in a mock-humble way that acknowledged him as a junior doctor and my usual GP as a senior doctor — but also that he was much more in the trenches at his location, as opposed to her more posh and secluded (<5 km away) location. (Again, recall these are both part of the same hospital system.) He was seeing all the chikungunya cases and she wasn’t, so he knew how to spot-diagnose and which test to run.

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He then told me that when my test came back positive, as he was sure it would (it didn’t), i should switch doctors. He also poo-pooed her having prescribed me calcium and instead prescribed a multivitamin; he also prescribed a different painkiller + antacid combination for no apparent reason. (i should note that neither doctor actually asked what i was already taking in the way of vitamins before prescribing these to me — i went ahead and bought everything i was prescribed so i could show off the detritus collected for treating a suspected virus over the course of three days.)

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Perhaps to some patients, this kind of confidence and blatant salesmanship are appealing and hearken to days of doctors-as-gods. Not to me. So, at a minimum, as a salesman, this doctor has no idea how to read a customer.

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In fact, his actions seem the very definition of not working in a system or a sign that the system is not working. He could have, instead, said he would call my regular GP and tell her about the extent of the outbreak and about which test to run. Or report it upwards so that there could at least be systemic learning within the hospital system. But, no, he opted to promote himself. And perhaps this is what the ‘system’ incentivizes. But, if so, then what exactly is the benefit of being part of a hospital system if neither my personal records nor basic system- or city-wide learnings can be shared among doctors within and across sites?

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To return to the initial issue of whether healthcare functions as a market, to the extent that it does, people often rely on quality indicators that may not be directly related to accurate diagnosis or perfect treatment (which are sometimes hard to assess from the patient point-of-view). So, there is cleanliness and comfort of the surroundings (the corporate chain does reasonably well on this). There is whether you feel listened to and respected as a patient (fail). Or, if your doctor isn’t particularly nice (we all secretly want to be treated by Dr. House), you should at least trust him or her but neither GP in this case did anything particularly trust-earning (and did some things that were trust-burning from my way of thinking). There is convenience (yes in terms of online scheduling but no in terms of tracking patients through the system).

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And, one would think, there would be a benefit of aggregating learnings and best practices across the system — but this appears to not be the case. The corporates may want to think again about how they are fulfilling quality demands.

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One of the most interesting things i have noticed over this illness episode, though it’s been present throughout my three years in Delhi, is how accessible doctors are expected to be here – and how easy it is to fall into a habit of WhatsApp-ing (now officially a verb?) with your doctor (and sometimes getting a ‘thumbs up’ emoji in reply, which is oddly validating after you report that your fever has broken or some other milestone has been reached — even when you know your doc may not actually know with which patient s/he is communicating, something i learned later!).

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To begin this potential relationship, you receive (at least one of) his/her mobile number on the paper you get with the notes on your consult as well as the prescription (one of the many pieces of paper one accumulates).

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i am hardly alone in availing the doctor’s number, as evidenced in part by the number of calls or texts a doctor might take during your 10-minubte appointment slot: clarifying prescriptions, checking whether a clinic visit is necessary for certain symptoms — and so on. This disruption is compounded by nurses, patients and others coming in and out of the consult room. A closed door has very little meaning — or at least not the meaning i expect it to have. (The curtain around the examination table is, mercifully, more sacred.)

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As indicated, i now WhatsApp fairly regularly with one of my doctors, which was quite comforting when, a day after one of my appointments, i woke up from a nap with a fever and a full-body rash. i was able to text her and received a response to send a picture of the rash. this raised some new and interesting questions:

Is it easy to operate a camera/phone when your fingers are arthritic? (answer:no)

What is the best lighting to capture a good picture of a rash? (answer: still unclear. all my pictures looked like everything was red, which was only partially true)

Is there a good way to get a picture of a full-back rash without ending up with something risque to send to your doctor? (answer: i couldn’t do it successfully, so these pictures did not go)

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These more informal chats also facilitate meeting outside the corporate private hospital. From studying health systems, i know that these sort of evening and weekend visits at small, private clinics are in many places a common feature of the public health system (government doctor by day, private practitioner by night). This was my first experience of big-private by day, small-private on the weekends. There were several pluses to seeing my doctor at her family’s imaging center rather than in the big hospital — lower consult fees, longer appointment time, more flexible appointment time (i.e. the morning after the rash broke out), less crowded. Mixed in with some guilt of being in a waiting room mostly of expectant mothers awaiting ultrasounds while i am blatantly feverish.

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As a small vignette from this particular visit to the imaging center, at about the lowest point of the illness (limited mobility + fever) there was a gap between when the doctor finished her consult and when i could get a particular needed scan done. The doctor let me nap on the exam table (no curtain) while she preceded with another consult in the same room. No one else seemed fazed and i certainly didn’t care by that point.

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Another manifestation of this tendency towards convenience and connection is the wide availability of diagnostic services that ‘come home’ (or ‘come to office’). In any case, diagnostic and imaging centers are quite often standalone entities, separate from the doctor’s practice (which also means you can walk in and ask for pretty much any test you want). Now of the big chains have set up mobile services. i have yet to avail this as someone pointed out that i may not want be a(n ill) woman home alone and invite someone in to my house to take my bodily fluids — but everyone who has tried this seems to find the service quite professional as well as convenient.

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When at a pharmacy last week for my ever-changing cocktail of painkillers, i noticed a sign alerting me that they can come home to do full cancer screens for the whole family. Which, (a) some things still feel like they should happen in a clinical setting — but perhaps i am old-fashioned? and (b) what a dreadful family bonding activity.

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In terms of communications with doctors and getting clinical services outside the clinic, i presume in Delhi, i am witnessing both the past and the future. There is still a tradition/expectation (among the middle- and upper-classes, in any case) of a family doctor who lives near by, who is also a family friend and might come over for chai and check-up and is available by phone when needed. So (working hypothesis) the past is setting present expectations and practices around access to some extent. But, if diagnostics can be untethered not just from the clinic but from brick-and-mortar in general (at least for collections, and then reports emailed to you), i suspect we might start to see this become a far more common practice globally.

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In this post, i continue to try to make research and observational hay out of my own illness in Delhi (starting here). As a quick re-cap, there was a week of severe, arthritic joint pain and weakness, which started to let us slightly right when the rash and fever kicked in. Those were mercifully short-lived but the joint pain has continued for over a month.

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When you shuffle (quite literally since my feet weren’t keen on bending and my hips weren’t into a long stride-length anyway) into a doc’s cabin in Delhi and the first words out of your mouth are ‘joint pain’ and it is dengue and chikungunya season, these are the immediate suspects (also here for news of outbreak). One of the doctors i saw was happy to diagnose me by sight and actually, actively encouraged me not to bother with the (pcr) bloodtest, since (he was a bit of an overconfident ass and) the test is expensive (about INR 5000 or roughly US$ 75 — definitely out of reach for a lot of patients). An earlier doctor had prescribed a cheaper test, which is more sensitive to the stage of the illness (IgM).

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At this point, i have had the two different chikungunya tests, a dengue test, a malaria test, & a parvovirus b19 test, all of which have come back negative. If malaria had been positive, of course, it would have indicated a very different treatment course than any of the viruses. And it’s good to know if you have dengue rather than a different virus because it is possible you may need a transfusion. But at the patient-level, all the rest of these viruses have a similar ‘treatment’ protocol – fluids, rest & painkillers (plus, as it always seems in Delhi, an antacid to pair with the painkiller).

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There perhaps isn’t much reason, then, to explore which specific virus ails you unless you, like me, find comfort in having a named illness rather than a collection of symptoms that could be named ‘a viral fever.’ (Update 9 Oct 2016: unknown viral fevers in Delhi.)

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And anecdotally, some folks in Delhi seem comfortable just saying that they have ‘a viral’ or ‘a viral fever’ or, intriguingly, that they are going to get tested for dengue to see ‘whether it’s dengue or a viral fever.’ (See also the name of the disease and the work of many anthropologists on this kind of non-specificity vis-a-vis underlying causes.) People also don’t seem a lot of stock in the tests — colleagues and at least one of the doctors i have seen feel like i probably had/have chikungunya, blood work .

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Which raises the question of why i have sought so many different diagnostics (yes, insurance covers it) and why a person might do so more generally. For me, i have both a desire to have a name for my diseases and also a suspicion that a virus doesn’t explain the full story of what has been an extended summer of illnesses rather than a single episode. But for a regular patient paying out-of-pocket, beyond sorting illnesses with different treatment protocols (so, parsing malaria from dengue), being able to pin a particular name to the cause of feeling unwell may not be that important — or, indeed, may be a luxury.

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From a public health perspective, though, lack of clear diagnosis means no numbers to report upward, to understand how illness patterns are changing (including with zika looming on India’s doorstep), when there is a legitimate outbreak, etc. i say that without a complete understanding of how my test results in a private, corporate hospital (some of which were sent to a private path lab in Bombay) make it into any sort of public health statistics at all. The current numbers being reported in Delhi and the surrounds certainly seem too low relative to what doctors off-handedly say they are seeing.

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All of this raises a few questions:

During an outbreak, should people satisfied with a diagnosis not based on blood-work (if it looks and walks like chikungunya, it probably is)? Is this sufficiently successful to make up for time and money saved?

If diagnosis (sorting between viruses, say) has more public than private benefit (since your treatment won’t change and having ‘a viral fever’ seems satisfactory), should diagnostics be subsidized? How, for whom, etc?

Can anyone explain to me whether and how test results from the private sector of clinics and diagnostic centers make it to official numbers? What would need to be done to improve reporting and merging of results into city- or state-wide stats?

Would i be more satisfied with a diagnosis of an unnamed virus in the States? Possibly — it’s certainly happened when down with non-specific ‘flu‘ symptoms that rule out the need to treat with antibiotics. But why am i more comfortable with this?

Like this:

Since i have lost much of the two months to an extended illness — and since my original reason for getting into public health was unsatisfactory doctor-patient relationships and inadequate assistance helping patients navigate hospital and health systems — it seems to make sense to write about observations and frustrations i had seeking treatment in delhi. i offer this up in the spirit of participant-observation research — not seeking sympathy but trying to point out what is currently not/working. i definitely welcome stories from others seeking health-care in india or elsewhere in the comments: this is a conversation that requires much more attention and probably research.

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There are three disclaimers. First, i am an extremely privileged patient in Delhi and attend one of the (arguably) best private hospital chains in town. So my case should be taken as something of a ‘best case’ in terms of how i am treated and my experience navigating the system. Second, being sick has made me incredibly grumpy. Third, we are still not entirely sure what i had/have. Given the on-going outbreak of chikungunya in Delhi and my symptom set, this is a plausible guess — but in full disclosure, the test for this and multiple other viruses were negative. While many people in Delhi seem satisfied with being diagnosed with ‘a viral,’ not knowing what i have is hugely frustrating.

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Whatever i have, ‘joint pain’ does not do justice to the experience — i have had what i would classify as joint aches or pains in the past and this weren’t it. Overnight-onset arthritis begins to get to the point: too painful to walk properly thanks to weak and angry feet, ankle & knee joints; too stiff and painful to make a fist around a bottle of water and elbows too weak to support the bottle anyway; etc. Suffice it to say, rapid aging it isn’t much fun:

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While this whole illness narrative begins a month back, this blog’s story starts today, as i am preparing to go spend a bit of recovery time with my parents in TX and get a second opinion in the process. My mom is scouting for a rheumatologist there (thanks, mom!). She wondered if i could just have my doctor here in Delhi just fax over my notes so far (because the new doc wants to review them before accepting me?). Well, no.

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Which brings me to my black folder. There is no patient filing system that stays at the hospital for me here in Delhi, though i presume the hospital tracks some sort of information linked to my mobile number in the computers at which people are always tapping (they are very capable of sending via emails the status of my reports or texting to quiz me on my satisfaction).

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Each visit generates quite a bit of paper for which i am responsible, making me in a very tangible way the curator of my health history. i find this slightly stressful and, again, unlike a lot of patients, i can read and comprehend the vast majority of what is in my file (handwriting aside), can sort through and put it in date order, and so on.

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At a minimum in a visit to my hospital, there will be the consultation fee receipt, the consultation notes + script and the receipt for medicines purchased. But, likely, there will also be an additional receipt for diagnostic tests to be rendered and then, at some point, the results of that test, whether it is a printout, a scan, an xray, etc. i have to carry all of these. These papers should be ready at all times. For example, vital signs are recorded on my consultation receipt for imperfectly clear reasons. The receipt is then taken out of my possession (ack! i need to photo that for insurance claims!) to be laid before the doctor, who sometimes notes down my vitals on a fresh notepad before beginning the consultation scribbling. More paper.

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For awhile, one pretends that the soothing seafoam-green envelope proffered by the hospital/clinic along with one set of test results will suffice for the burgeoning ream of paper. But any sort of ongoing illness puts that rapidly to rest. Your makeshift, portable medical record is suddenly and literally coming apart at the seams when you have an extended illness episode, along with your feeling of being able to present your case to another doctor (or to the same doctor, since they have nothing else to which to refer back).

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Now i have upgraded fro a tattered folder to one of those report-type folders with the plastic sleeves built-in — the kind with a tab on each sleeve, which i have labelled with the month. Each month contains all the the august sleeve is pree-tty full but it is doing the job nevertheless. Mostly.

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Over the course of this illness, i have worked to keep everything as organized in this folder as possible as a way of imposing some order on the multiple visits, the multiplying symptoms, the confusing test results and their implications for yet more tests. When your fingers aren’t working properly (or more generally when you are feeling like crap), it isn’t very fun to sort through these papers and supple-ly sliding them into the slippery plastic sleeve. It also isn’t particularly fun to clutch this increasingly sweaty folder while you try to navigate your way through jostling patients, especially when your standard elbows-out strategy has been rendered impossible. Hospitals, as i contend in future posts and as others have said before me, aren’t very easy places to be sick. And, at least in Delhi, to be without a chaperone/Moses.

And, .

But one does carry one’s plastic folder to place before the doctor: see, i am a good patient. A conscientious patient. You can tell because my files are in order that i will probably try to follow your prescriptions and that i get what is going on here. And that this whole thing has been ‘going on’ far too long. We can both see that, right?

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i can’t pinch my fingers properly to pull the sheets out for you but here, this is the August sleeve. You can just pull them out and… sure, spread them all over the desk. Gah, this is the same feeling as when you had the immigration officer with your finger marking the visa page and they insist on closing the passport booklet and then casting you disgusted glances when s/he can’t find your visa. But worse.

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Yes, i could point(-ish) you to what you’re asking about… but rifling through will work eventually as well. Taking a call while you’re looking and while i’m sitting here will definitely help as well. Oh, you’re done? Then, sure, sweep everything back into a haphazard pile and then just… OK, bypass the plastic sleeve. Just close the cover over the whole mess. That’s cool. i just spent 3 minutes explaining how painful it was to work my fingers and i assume you were listening because you prescribed multiple blood-tests and several medications of questionable necessity. You even took notes. Including those notes, altogether, that’s four more pieces of paper i am going to acquire in the next hour. To add to that mess you just made of my medical history. To clutch-ish until i get home and then sort the whole damn thing again after the next painkiller to show the next half-interested doctor that i am a good patient, it’s just that the illness isn’t going away.